Wednesday, June 17, 2015

About half of the parents and professionals who've filled out our BLOOM survey so far have asked for more stories on families raising kids with high medical needs. Here is a start!By Louise Kinross

As a nurse practitioner who’s supported hundreds of families bringing home a child who uses a ventilator, Krista Keilty knew these parents struggled to get a good night’s sleep.

But no one had ever measured the difference in their sleep compared to that of parents raising children without health issues.

So the SickKids researcher conducted a study that used a wristwatch-like device to measure sleep and wake activities over a week in 42 parents of kids who use medical technology and 43 parents of kids who don’t.

“We found the parents of kids with medical complexity sleep 40 minutes less per night,” Krista says. “When you think about that difference over the span of six years, which is how long the families had on average cared for their child, that’s three times as many sleep-deprived nights or 208 less full nights of sleep in that period. That’s a large sleep debt you can’t get back.”

In addition to sleeping less each night, the sleep of parents of kids with high medical needs varied widely from night to night. “Their sleep was all over the place. It means they might get to sleep at a reasonable hour, which is 11 p.m., one night, but then not get to sleep till 1 or 2 the next night, and then get up at a different time each morning.”

Twice as many parents of kids using technology were identified as poor sleepers, waking up more and not feeling rested in the morning. They also had three times as many nights when they got less than six hours of sleep.

“These caregivers are needed by society and by their children to be healthy and well and capable of caring for them for years to decades at home,” Krista says. “Yet the sleep deprivation they get predicts these parents will experience negative downturns in their health much earlier than other adults.”

Lack of sleep puts these parents at risk for heart disease, obesity and pain and may compromise their immune system, Krista says. “We also know sleep deprivation over time influences mood—possibly causing depression and anxiety—and the ability to complete tasks that require quick judgment and decision-making. The data would suggest the parents of kids with medical complexity are at increased risk of [car] accidents.”

The study found that three times as many parents of kids with medical complexity “had a level of depressive symptoms that means they may have clinical depression,” Krista says. “When making study home visits I had a number of conversations with family caregivers who would talk quite openly about how difficult it is for them sometimes to live with this ‘blue’ mood they have on a day to day basis.”

The reasons for sleep loss in parents of kids using technology requires further study, Krista says. “They can be categorized into parents who are so vigilant they can't sleep even when they have the chance, or have anxiety or worries or poor sleep habits themselves, or poor sleep habits in the child that result in them waking up and needing to be consoled. The care needs can also be so high that parents are up every two hours on a good night to turn and reposition their child. There are also environmental factors, such as the number of nursing hours families get and how the technology itself may intrude on sleep—for example, waking parents when false alarms go off.”

The nursing hours families in the study received ranged from zero to 100 hours per week, with parents getting about two nights of coverage a week on average. “This means that for at least five nights a week they are managing on their own.”

Not only do parents of kids using medical technology need more sleep, Krista says, but they need better quality and more consistent sleep.

In addition to measuring sleep and wake activities in the parents and children, the parents in Krista’s study answered questionnaires about depression, sleepiness, fatigue and quality of life.

The degree of sleep disturbance experienced by parents of kids with medical complexity may interfere with parents’ ability to work outside the home and their motivation to make stay connected to friends, Krista says. The parents of kids with technology in her study were more likely to be single, underemployed and have a lower household income.

Krista says the study is a first step in finding effective sleep interventions for parents of kids using medical technology. “In order to plan an intervention, we needed to quantify and characterize the sleep problems in this population so that we could think about what measures to look at in future, what treatments to try and how big a sample size would be needed.”

Previous studies have always relied on parent self-reports about sleep habits, which aren’t reliable.Krista has already launched a second study to assess Ontario parent and home care providers' ideas about the causes of sleep disturbance and what interventions may remedy them. Results from the second study will guide future research to test a specific intervention.

Krista Keilty is nurse practitioner and project investigator with the Centre for Innovation and Excellence in Child & Family-Centred Care at the Hospital for Sick Children. She is also a fellow in Innovation in Pediatric Homecare and a CIHR post-doctoral fellow in Sleep and Biological Rhythms.

9
comments:

This study confirms everything that I am experiencing and have been thinking about lately. I am completely sleep deprived. My daughter is not medically dependant on technology (yet) but for 17 years, I have always had to have an ear out for her, as she usually calls out during the night, falls out of bed, gets tangled up in sheets, or just wakes up and has a hard time getting back to sleep. This 17 years of sleep disturbance is really affecting my life. I just have a hard time concentrating, and have a lot of anxiety lately in which I have experienced to this degree before. I even thought I had a brain tumour. I went to the doctor and took sleeping pills for 2 weeks. It was amazing to feel the difference that a deep sleep can do to your quality of life. When I am rested it is like the world is full of sunshine, and when I don't it is like a dull grey day. Thank you for confirming my thoughts. If I can help in any way please let me know.

Holland Bloorview does offer respite, in the form of short admittance into hospital, allowing parents to take a break. However, availability is a factor, as we have reached capacity. So, what would parents need or require, for their children, to feel happy and safe at another facility?

Parents and advocates can approach some non-profit organizations, but first we must ask ourselves, What do we need or want?

My Tilly isn't vented.. & I can relate.. She has Down's syndrome, she's tracheostomy, oxygen, suction, neb, meds and tube fed dependant 24/7, she's blind, has suffered 99% brain damage due to a cardiac arrest she suffered at home during the night and so on and so on. I get between 3-4 hours sleep per night every night.. If Tillys unwell that means 0 hours sleep. I Wouldn't change her though! She's tought me so much about life & im so very blessed to be able to call the liccle diamond mine xxx

My son has cerebral palsy. He's not vented but has seizure disorder as well and regular bouts of insomnia, which are common for kids who have neurological issues. There have been countless periods of times, up to months, where I average two hours of sleep per night...sometimes continuous and other times it's collective time. While he does't seem to be effected by it, I know my capacity as a human is greatly compromised. Sleep is so vital to our wellness, but what can you really do when your child needs you?

How funny that I see this article as I sit here at 5am, unable to go back to sleep for over an hour after getting up to turn off a vent alarm. I do not sleep well at night at all, even if my son does. My ears are always open in case he needs something, and with multiple things that alarm at night, that means little sleep at all!

My son has been in and out of the hospital. He has been on the vent and currently on oxygen. It is a joy to be able to wake up and see him breathing. I am more than happy to help him through rough times. He also has autism and a seizure disorder. I am his voice and I would not change a thing.

I had to giggle reading some of this. I MIGHT average 3 uninterrupted hours of sleep a night if I'm lucky. I also have to say nurse or no nurse, if a parent hears an alarm, they're going to get up. It's part of caring for your child. Their lives become ours and our lives become theirs. I'm happy with that too. I wouldn't have it any other way. Seeing her big smile and seeing her belly laugh makes my world a better place. She's a blessing.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.